Rare Care Podcast

237: An Interview With Dr. Paul Esteso on Cardiac Health in Duchenne

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Duchenne expert Paul Esteso, MD, PhD, medical director of the cardiac antithrombosis management program at Boston Children's Hospital.

236: An Interview With Teresa Barnes, Founder of PF Warriors

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Teresa Barnes, founder of PF Warriors—a global support network that provides education, inspiration and hope to individuals and families affected by

235: An Interview WIth Dr. Martina Cornel, President of the European Society of Human Genetics

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Martina Cornel, MD, PhD, about the importance of adopting standardized newborn screening for rare diseases throughout Europe.

234: An Interview WIth Diane Zapursky Quale of the Bladder Cancer Advocacy Network

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Diane Zapursky Quale, who founded the Bladder Cancer Advocacy Network 20 years ago with her late husband after he developed bladder cancer.

233: An Interview With AI Expert Dr. Laurah Turner on Artificial Intelligence in Medical Education

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Laurah Turner, PhD, associate dean for artificial intelligence and educational informatics at the University of Cincinnati College of Medicine.

232: An Interview With John MacMahon, CEO of CytoKind, on the Benefits of Artificial Sunlight

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews John MacMahon, a New Hampshire-based medical devices company that specializes in phototherapy to treat fatigue in people with multiple sclerosis.

231: An Interview With Dr. Eric Small, Former President of ASCO

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Eric Small, MD, who recently stepped down as president of the American Society of Clinical Oncology (ASCO).

230: An Interview With Jessie Dubief, Social Research Director at Eurordis, on Mental Health in Rare Diseases

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Jessie Dubief, social research director of Eurordis, about the organization's new survey on the importance of addressing mental health among both pa

229: An Interview With Naomi Aziz, Patient Advocacy and Engagement Lead at the Endometrial Cancer Research Foundation

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Naomi Aziz, patient advocacy and engagement lead at the Endometrial Cancer Research Foundation. June is Uterine Cancer Awareness Month, and endometr

229: An Interview With Naomi Aziz, Patient Advocacy and Engagement Lead at the Endometrial Cancer Research Foundation

228: An Interview With Dr. Michelle Ng Gong, New President of the American Thoracic Society

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Michelle Ng Gong, MD, president of the American Thoracic Society (ATS). Dr. Gong formally replaced Raed Dweik, MD, at the ATS 2026 conference in Orl

227: An Interview With Dr. Andrew Wilson, Scientific Director of the Alpha-1 Foundation

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Andrew Wilson, MD, scientific director of the Alpha-1 Foundation, about the latest therapies to treat alpha-1 antitrypsin deficiency, an incurable g

226: An Interview With Dr. Vallerie McLoughlin, Director of the University of Michigan's Pulmonary Hypertension Program

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Vallerie McLoughlin, MD, director of the Pulmonary Hypertension Program at the University of Michigan-Ann Arbor, about results of a phase 3 trial fo

225: An Interview With Craig Martin, Founder and CEO of the Orphan Therapeutics Accelerator

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Craig Martin, founder and CEO of the Orphan Therapeutics Accelerator (OTXL) — a nonprofit biotech dedicated to advancing shelved clinical-stage ther

224: An Interview With Henriette Farkas, Director of the Hungarian Angioedema Reference Center in Budapest

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Henriette Farkas, MD, PhD, director of the Hungarian Angioedema Reference Center in Budapest, and a world expert on the treatment of HAE.

223: An Interview With Dr. Antón Blatnik on the Molecular Mechanisms Driving Neuromuscular Disease

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Antón Blatnik, PhD, who recently won a $150,000 grant from Cure SMA to study the molecular mechanisms that drive neuromuscular disease and gene expr

222: An Interview With SMA Expert and Neurologist Dr. Kathryn Swoboda

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Kathryn Swoboda, MD, faculty emerita at Massachusetts General Hospital and a neurologist and rare disease specialist who's been working on SMA for n

221: An Interview With Dutch Neurologist Ewout Groen of SMA Europe

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Dutch neurologist Ewout Groen, PhD, a member of the Scientific Advisory Board of SMA Europe.

220: An Interview With Dr. Jaime Moore on Obesity Medications and Neuromuscular Disease

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Jaime Moore, MD, about weight loss drugs—specifically the role of GLP-1 receptor agonists in treating children with neuromuscular diseases and obesi

219: An Interview With Dr. Natalie Truba on the Psychological Aspects of Gene Therapy

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews pediatric psychologist Natalie Truba, PhD, on the psychological aspects of gene therapy in neuromuscular disease.